Right now, we don’t know how many people are living with metastatic (secondary) breast cancer in the UK. And without proper data, we’re operating in the dark. But this may be about to change in England.
In February this year, we secured a commitment in the Government’s National Cancer Plan for England to “define and count recurrent cancers, starting with metastatic breast cancer” by the end of 2026. We did this after years of campaigning with our supporters, the patient group METUPUK and others.
Turning data into action
The National Cancer Plan commitment should mean we finally get a number for how many people are living with metastatic (secondary) breast cancer in England.
But this will only be the start.
That’s why we’ve set out 4 ‘tests’ for metastatic breast cancer data. These must be met to make sure they everyone living with the disease is counted, seen and supported.
To truly make a difference to the lives of people with metastatic (secondary) breast cancer, any data collected needs to be:
Visible: People living with metastatic breast cancer and their care and support needs are visible in the data
Transparent: The limitations of any metastatic breast cancer data are clearly explained
Timely: Data is published regularly, with a clear plan to improve its quality
Impactful: The data collected is used to improve services for people with metastatic breast cancer.
Why is so this important?
For years, the NHS has not published data on people living with metastatic (secondary) breast cancer. Despite it being mandatory for Trusts to collect this data since 2013. Without proper data, we are operating in the dark. We don’t even know the number of people living with this disease. As a result, people living with metastatic breast cancer have been left feeling like they don’t count.
We are not expecting any metastatic breast cancer data shared this year to give us all the insight that’s needed. But it'll be a crucial first step and it must be the start of ongoing improvements, not the end. We need to go further.
We want to be able to understand if people living with metastatic breast cancer are getting the right treatment, support and care. That’s why we’ll continue to work with patients, healthcare professionals and other charities, as well as holding the government to account to make sure this data improves the lives of people living with metastatic breast cancer.
Keep up to date with our work
Keep up-to-date with our work and get involved in improving metastatic (secondary) breast cancer data collection. Sign up for updates to hear how you can take action to help people affected by breast cancer.